I'm getting worried

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Usmccolon
Posts: 50
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Thu Jan 14, 2021 2:08 am

Just wanted to update again.
So that abdominal pain is gone for moment. I'm starting to not wear ace bandage at all so hopefully it doesn't come back.
Still have been exhausted, muscles hurt and getting tired so much easier. However I complained again but to my new primary and I told her everything going back. Just saw online some of the blood work and I think she may have found hopefully the reason for all my pain and issues especially with this recovery. One thing she tested was my vitamin d level and it came back at 6 ng/ml which is really low. Fingers crossed

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beach sunrise
Posts: 400
Joined: Thu Mar 05, 2020 7:14 pm

Re: I'm getting worried

Postby beach sunrise » Thu Jan 14, 2021 6:21 pm

Holy smokes!!! That is a low D level. I hope the finding is the cause. Let me know what the plan is to raise it please. I am interested in vitamin D protocols.
I started out at 93 a yr ago and now since I backed off taking high dose because phosphorous level was over normal it now sits at 43. Working on getting it back up there slowly.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Usmccolon
Posts: 50
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Fri Jan 15, 2021 9:23 am

I'll definitely let you know, still waiting on call from primary to discuss it. I called them yesterday and they didn't see results yet. I also last night was able to see my c reactive protein was 11.7 mg/L which is high but my sed rate was normal at 3. Long time ago I had c reactive protein measured and it was 3 mg/L so it's definitely elevated for sure.

Something else that might effect my vitamin d protocol is fact I take a thiazide medication and have had borderline and high levels of calcium in my blood in my past. Hopefully I hear from the today.

I thought vitamin d ideal is between 30 and 50? Up to 100 was the old standard that they changed a few years ago at least according to my reference ranges on my blood work.

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beach sunrise
Posts: 400
Joined: Thu Mar 05, 2020 7:14 pm

Re: I'm getting worried

Postby beach sunrise » Fri Jan 15, 2021 1:38 pm

Is yours CRP or hsCRP? If hsCRP then it is high. Mine (hsCRP) was high so one of the main reasons I take celebrex and it lowered it to .7 and some other inflammation markers. Good your ESR is low. Do you have your LDH checked?
Ya, the old vitamin D standard is the one I strive for. It is so important at the cellular level for thousands of functions. One of my drs told me he believes the reason the standard was lowered is because a great percentage of people have terrible diets and obesity, don't get enough sunshine so it was lowered to make people feel better about being unhealthy, lol. Who know!
I hope you hear back today!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Usmccolon
Posts: 50
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Fri Jan 15, 2021 9:51 pm

Mine looks like regular crp with normal range of 3 to 8 so 11.7 is definitely high.

I called Drs office to let them know last couple of days my hands have be intermittently hurting and throbbing pretty bad as well. They are sending my 50,000 iu vitamin D pills to take once a week for 4 weeks to bump up numbers. Nurse also said that my primary was thinking about nerve conduction studies if I was interested for my intermittent numbness and tingling that I've had for years and used to be in extremeties only but now I get it sometimes in back and abdomen.

Would talk about my crp level though because he said they were still waiting on some more results from blood work to get a better picture before going over them.

Usmccolon
Posts: 50
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Fri Jan 29, 2021 1:02 am

Update: Ive been taking 5000 vitamin d3 while waiting for 50,000 d2 to arrive. I can definitely tell a difference already though. Blood sugar is coming down and my muscles don't completely ache and I can actually move better.

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GrouseMan
Posts: 854
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: I'm getting worried

Postby GrouseMan » Fri Jan 29, 2021 12:39 pm

I have been taking 10,000 IU of Vitamin D3 daily for some time now. A friend of mine was in an auto accident and banged up pretty bad. Long after she recovered, she had lingering pain. Her doctor put her on high dose Vitamin d and that helped a lot. So I decided to try it to see if it would help some of my joint pain. Also I don't get outside much during the day to get sun shine. Additionally - I was trying to encourage my wife to also take it while she was undergoing Chemo. I wasn't convinced she was getting enough.

An additional benefit may also be that people with good Vitamin D levels if they get Covid-19 usually don't have to be admitted to the hospital. Though no one knows for sure - its possible it might be protective as well. Might be working for me, I have not turned into a clean freak at home. I typically only wear a mask in indoor public situations. I'm not particularly good about washing my hands. No Covid for me so far. I'd say go for the Vitamin D!

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

Usmccolon
Posts: 50
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Fri Jan 29, 2021 11:53 pm

My understanding is that vitamin d is both a vitamin and a hormone. Also I believe I read that every muscle in the body has receptors for vitamin D as well. It's important for immunity and is fat soluble meaning that's it's possible to take to much which can cause harm.

10,000 daily is on high end I think unless working with physician. I know my 5,000 ones say to consult physician about their use. Have you been tested for vitamin D?

From what I've read there is a decent amount of controversy around how much is important and how much it actually benefits people. I'm betting like most things in life the answer is probably somewhere in middle and that to little can throw body out of balance and at some point to much reaches the point of diminishing returns.

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beach sunrise
Posts: 400
Joined: Thu Mar 05, 2020 7:14 pm

Re: I'm getting worried

Postby beach sunrise » Wed Feb 03, 2021 2:12 am

You are right, vitD is very important to thousands of functions in the body.
My onc put me on 10,000 IU as of last Tues. My D level was at 42.3
Keep an eye on your mag/cal ratio. Watch phosphorous levels.
Let me know how you are tolerating it pretty please.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Usmccolon
Posts: 50
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Wed Feb 24, 2021 11:04 am

Calling Drs office back to make another appointment. Overall pain is down since starting the vitamin d but I'm still sore and not feeling well. Ive also had this rash on arms for who knows how long now and one of my incisions from Oct still looks red like there is an allergic reaction still going on after my reaction to the dermabond.


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